Raising Awaresness of Nets & Carcinoid Syndrome through tales of family survival

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One thing and another its been a busy week. Started with a visit to the GP on Monday, she is perturbed that despite I’m on my new super duper feeding regime through Lavita, my gastrostomy feed that Marion from the CENT team has carefully worked out for me and I am getting food pumped into […]

I had an appointment at the Western General Hospital with a consultant I have never seen before. The Team she is with is The PACT Team. This is Patient Experience and Anticipatory Care Plan Team. The main purpose of the meeting was to discuss my health problems and for the consultant to take notes […]

Eleven months ago I switched from nasogastric tube feeding to gastrostomy tube. After a lengthy stay and several other stays in hospital with complications, sepsis and months of continual leakage. It is apparent that the surrounding area is never going to totally heal. The health professionals have tried their best. I am lucky to have […]

Well today its my birthday. I am half a century – the big 50. Many folk hide their age, dread being fifty and pretend their younger than they are. Me, I’m happy to be here. I feel privileged to say I have hit such a milestone. My fortieth decade was a mixed one. There was […]

You look great – that’s the words we all long to hear. We all want to look our best. Whether we are nipping to the supermarket, having a lazy day, or going out for dinner. The last thing I want is folk to be surprised that I look “normal” So why is it that there […]

Back from the NET specialist just ten days and we find ourselves travelling up the scenic A9 in our Audi TT roadster with the roof down. Boy it’s great to be travelling for total pleasure. We are on our way to Nairn. Going to celebrate Cousin Sharon’s 40th birthday. This was no formal birthday […]

Well we are 7 days into the year and I am feeling fairly positive. We have had a trip to the ballet, booked a foreign holiday, we have a lovely wedding to look forward to. Both Steve and I will be celebrating our 50th birthdays and our 30th wedding anniversary. We will have our usual […]

The first health professional to suggest tube feeding for me recommended PEG feeding. However, when the appointment came round with the specialist he was very doubtful, in fact negative in approach. He explained how for me it wasn’t the best going in blind into my tummy when we didn’t know exactly where neuroendocrine tumours were […]

The Monday after Steve’s retina repair surgery we have a busy day ahead. Steve’s vision is highly compromised and the next weeks recovery is crucial. Steve gets up and puts in his eye drops, he has three different drops to put in. I would help, but unfortunately it would more than likely send him back […]

Wednesday: 8am the day after we arrived home from the wedding down south Steve was on the phone to the doctor surgery to get an appointment. His eye was still troublesome. He described the vision out of one of his eyes like looking through a very dirty window. He said it was murky. Good – […]